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Sunday, November 20, 2016

So this will likely be a controversial post since I know a huge number of people in both Lyme and dysautonomia communities have been diagnosed with POTS.........

POTS stands for postural orthostatic tachycardia syndrome. By definition, it is a rise in heart rate of 30 bpm or a sustained heart rate of 120+ upon standing. It can cause a multitude of symptoms, including fainting; however, it's a benign condition. The need for treatment is to improve symptoms, not as a lifesaving measure. There is a TON of advocacy, fundraising and research going on specifically for POTS. It has definitely claimed the spotlight in the dysautonomia realm. One of the main advocacy associations for dysautonomia focuses almost exclusively on POTS. With limited advocacy efforts for other causes of fainting, including other disorders that fall under the dysautonomia umbrella term, many patients are unaware that there could be other more sinister causes behind their fainting episodes.

A few years ago I was diagnosed with POTS. I met criteria. Unfortunately, having that benign explanation/diagnosis on my chart led to a delay in diagnosing and treating another serious condition with similar symptoms that required a pacemaker: heart block. The physical symptoms are very similar to POTS, but since I had already demonstrated on ECG that I had tachycardia, it was difficult to get doctors to believe that I was sporadically changing to the opposite problem; severe bradycardia. Eventually they listened...............after I went into cardiac arrest.

You may very well have POTS, and yes it is benign, but having POTS does not make you immune to developing other conditions and arrhythmia's. It's of vital importance to not settle on a diagnosis too easily when fainting is involved. Make sure before you attribute fainting to POTS (or Lyme), that you have caught your episodes on an ECG. You may need to request a 30 day heart monitor or an implanted loop recorder to do so. Also, do not assume that just treating Lyme is going to resolve everything when it comes to heart symptoms. I know we as Lyme patients are treated horribly by mainstream doctors, but when it comes to heart symptoms, a LLMD is not a specialist and should not be advising or attempting to treat those types of symptoms. Any responsible LLMD will immediately refer a patient with heart symptoms to a cardiologist or electrophysiologist. The latter is a better choice for people whom do not have structural heart disorders (most Lyme and dysautonomia patients fall into that category). Also, remember, you are not going to a cardiologist to treat Lyme or to discuss Lyme. Let your LLMD do that, and let your EP take care of their specialty.........your heart.

I routinely see posts of people who have fainted with warning signs of other disorders saying things like "my POTS is flaring today" (and their heart rate is in the 30's) or "I had that and it will go away with Lyme treatment." These types of statements always scare me. Fainting is nothing to mess around with. Depending on the underlying cause, it can be benign or life threatening, infrequent or constant. If you haven't caught a fainting episode on an ECG, don't assume it's JUST POTS or JUST LYME. There are many other things that could be going on. You could be having vtach, vfib, severe bradycardia, heart block, hypotension, etc.

Some warning signs that your fainting is not just POTS or Lyme are the following:

So I got my first Mediport about 6 months ago. I don't have it for Lyme. I have it due to severe autonomic dysfunction to use for IV saline to support my BP. I have no intrinsic control of hypotension anymore.

A port is a device about the size of a dime (but much thicker) that is implanted under the skin of your chest or sometimes your arm. The outside border of the port is metal and in the center is a silicone circle that can be stuck with a needle and re-seal thousands of times. From the top of the port extends a plastic catheter that enters your jugular vein and extends down into the larger veins near your heart (superior vena cava). Ports allow medications to be delivered intravenously easily. It can also be used for blood draws via a home nurse or at an infusion center. Regular labs will not draw blood off a port.

The specialists involved in implanting ports are either interventional radiologists or general surgeons. The doctor that thinks you need a port sends an order for placement to one of the two. They call you and schedule you for the surgery. Most people get sedation. I do not. Local lidocaine is my preference. Occasionally people also get general anesthesia but that's not routine.

Before you get a port, it's important to arrange how you will care for it. It will need to be locked/flushed with heparin between uses and at least once per month when not in use. The choices at first are an infusion center or home health. Later you can learn to do things yourself. That is my strong preference since the two times someone other than myself touched the port they did not use sterile technique. An infection in a port is a big deal. It can kill you. Your doctor will need to arrange an order to an infusion center or for a home nurse. The doctor will also need to arrange supplies at an infusion pharmacy separately. You will need special needles called huber needles, dressing change kits, end caps, tubing for gravity bags, a pole or a pump, saline flush syringes and heparin flush syringes in addition to whatever meds you will be infusing.

When you arrive for surgery, you'll change into a gown and before doing so, if you are female, they may outline your bra strap in marker to try to avoid placing the port in an irritating spot. Standard questions will be asked and heart, BP, and oxygen monitors will be attached and you. You may get an IV line and pre-operative antibiotics. Then you will be rolled into the procedure room, transferred to a table and draped and sanitized for surgery. You may not meet the doctor doing the surgery in advance. I did not and that created tremendous problems due to my heart condition. When the doctor comes in, he will numb the area with lidocaine shots and make a tiny cut in your upper neck in which to thread the catheter. He'll also make a larger cut down lower and create a pocket for the port to fit into. None of this is severely painful, but it's not pleasant either. It's totally manageable without sedation, but if you are prone to anxiety you might prefer it.

After the catheter is attached to the port and the port is in the pocket they might stitch the port itself onto muscle. This is of benefit because it will be easier to access and less likely to move and flip. They then close the port incision up, access it, inject dye do a quick x-Ray to make sure it's working and then you are all set. Some people have them leave the port accessed. You must have supplies and care organized at home or at an infusion center in advance if you do this. Sometimes they will not let you leave with it accessed. In my case they wouldn't.

I learned quickly that it was going to be safest and most convenient for me to learn how to access the port myself. It's not that difficult. The most important thing is to make sure that you maintain sterile technique. The needle and sterile dressing can stay in for 7 days. During this time you cannot get that area wet. When the needle is not in, you can shower and swim as you wish.

After 5 months, my first port stopped getting blood return. This is a common problem. In my case it had a fibrin sheath confirmed via X-ray. The hospital tried to de-clot it with TPA and it didn't work so I had to get a replacement.

My second port surgery did not go smoothly. I was very unhappy with the specific department I dealt with. They changed providers (new residents) at least 10x over two appointments and every time the plan changed too. There was no communication between them. One of the nurses was not using sterile technique and left me with an unprimed line of air on a pump. The supervising NP refused to communicate with me in advance regarding my pacemaker and she would not allow me to use my magnet or my medication when I needed to for a sustained rate of 160 ventricular paced. She also didn't call my EP or the pacemaker company as she should have. Then she tried to order a med I was allergic to in my IV line. I was in the room with a resident and two RN's only. There was no radiologist supervising, yet several stated that they were "present" when they were not in my notes. So it was billed as if I was with a specialist for hours under their name for a doctor that never once met me. These are the kinds of things most people wouldn't know about since they are usually sedated by that point. I did not have a problem with the resident that did my surgery, but I did have a problem with the overall disorganization and lack of communication in the department. It put me at risk unnecessarily several times. I complained to the "patient relations" office and absolutely nothing was done. I mention this because you, as a reader, deserve reality. Your experience may be great, but it doesn't always go that way. Be prepared for crappy treatment so that you are ready to advocate for yourself. If it goes well, you'll be happily surprised instead of shocked, disappointed and worried about infection like I was.

For information/instructions on how to access a mediport with sterile technique, click here.